Happy Epilepsy Awareness Month! I’m happy to announce that my memoir, The Sacred Disease, will be published on 11/16/15 and hopefully help to raise awareness about epilepsy during this important time. The electronic version of The Sacred Disease is now available for pre-order on Amazon and the print version will be available for pre-order later this week. If you’d like to contribute to a fantastic organization (100% of author royalties from the sale of my book will be donated to CURE) or learn more about epilepsy, please consider visiting the link below.
The following is an excerpt from The Sacred Disease when I was pregnant with my first son. . .
DURING MY SENIOR resident rotation in the Neonatal Intensive Care Unit (NICU), my job was to attend all high-risk deliveries and lead the team of pediatric residents during newborn resuscitations. Most of the time, this job was simple and rewarding. We scrambled into delivery rooms like a team of blue-clad superheroes and gathered medical supplies for every contingency like a well-honed pit crew. After we prepped for the imminent delivery, we often had a few moments to settle back to our appointed spots in the corner of the delivery room and wait.
It was a privilege to witness the shocked look on a baby’s face as she opened her eyes to meet the world. During our evaluation and resuscitation, I loved watching the baby respond to the sensations of touch, sound, and sight. I relished the sight of translucent skin transforming from blue to pink and the sound of each new cry that welcomed the ambient air and swept the fluid out of a newborn’s lungs. I loved the new fathers, reduced to a puddle of tender surprise, who sidled up to the resuscitation table, peered over my shoulder, and watched, mesmerized by life’s first moments. Each time I handed over a dry and bundled baby to speechless parents, I loved to say, “He’s perfect!” while I surreptitiously patted my belly and wished for the same scene to play out in my life.
Unfortunately, not every delivery was picture-perfect. Most of the time, we knew if the baby had a birth defect or major medical problem before the time of delivery, thanks to the accuracy of prenatal ultrasounds. Still, there were a few surprises.
I was working one night when we were called to an emergent Cesarean section of a baby who had an unexpectedly trapped hand poking out of the cushioned confines of her mother’s uterus. Somehow, through twists and contortions in the womb, the baby’s arm became stuck over her head. During the initial phase of labor, her mother delivered the baby’s hand but was unable to deliver the rest of the baby.
I jogged down the hall with the pediatric team, following the gurney that carried the laboring mother. A group of concerned obstetricians swarmed around her. We hurried to scrub our hands and fingernails and donned our surgical masks, hats, and booties before we fanned out to our respective positions in the operating room. I stood sideways next to the infant warmer; my pregnant belly interfered with my ability to fit easily in tight spaces. I wondered what to expect while I watched the obstetric team make a quick incision to free the baby.
Moments later, the pediatric intern swiftly placed the baby on the warmer and we began our assessment and resuscitation. I reflexively dried and stimulated the baby and my anxiety decreased when I noted that she was breathing and crying spontaneously with a vigorous heart rate. Three of her four limbs flexed and extended as expected, but the fourth, the right arm, lay limply at her side like an azure balloon.
I touched and lifted her arm with hesitation. Her fingers looked like five blue sausages attached to a ballooned arm. Her entire arm jiggled like electric-blue Jell-O when I gently laid it back on the table. Soon I sensed the presence of the new father over my left shoulder. Instead of pronouncing the baby perfect and healthy, I explained that we would have the pediatric orthopedic team assess the baby’s hand and arms promptly.
Tears welled in the father’s eyes. Over the cacophony of the noisy delivery room, I gently asked him what they planned to name the baby.
“Elizabeth,” he uttered through tears. “Just look at her,” he continued. “Her eyes are exactly like her mother’s! She has a dimple on her chin like me! And look at that thick head of hair! She’s going to be a beauty.”
I nodded and relaxed, ashamed that I’d thought the baby’s deformed arm and hand would be all a new father would see. Instead, he saw beyond her obvious imperfections and focused on the beauty elsewhere. I wished for a moment that we all could be as authentic and true as a new, proud parent. Whether there was a discolored, swollen limb hanging without purpose or rogue electrical currents coursing through a brain, there was beauty in everyone.
Even this baby.
* * *
As the weeks passed leading up to the delivery of our baby, I felt as if my life were mimicking an epileptic seizure. Time and again, I whipped full-force from one role to another. I jumped from physician to patient to expectant mother in a manner similar to the involuntary forceful movements of my limbs when I experienced a seizure. When I collapsed into bed each evening, my persistent dull headache and general exhaustion was reminiscent of the familiar post-seizure lethargy that marked many of my days. The obstinate ambiguity of what to expect for the little boy growing inside mirrored the uncertainty over which days would bring a new epileptic seizure. I fought back fear of how seizures affected our baby and tried to ignore the nagging truth that although I diligently followed all the rules of pregnancy and avoided alcohol, caffeine (mostly), the cat litter and soft cheese, our baby was at markedly increased risk of a birth defect or injury. I felt convulsed and fragile, tacking between invisible but tangible boundaries.
And yet, reveling in my dreams and excitement for motherhood, I was charged with expectation and anticipation. No matter which role I played – doctor, patient, wife or mother – I understood that unpredictability was as important and necessary to life as breath. I acknowledged the unsettled and unknown as things to discover rather than fear. A new and strengthening inner peace chased away my demons.
After years of fighting, I accepted that epilepsy is beyond my control. Patient outcomes are to some degree beyond my control. Our baby’s future was unpredictable but full of promise. Whatever I don’t know is OK. My life is OK. I embraced the uncertainty and relished the surprises that came with each day.